Quilts and Swollen Knuckles.

My parents were exuberant at the news. I watched their tired faces transform that night. Seeing their relaxed smiles calmed my heart. We were happy for the good news. But a lingering part of me was still uneasy. My body still screamed for relief.  

A few more days passed and we were on our way to the rheumatologist. I wasn’t even sure what a rheumatologist was. “I think they are the doctors who care for people with arthritis? Aren’t those patients usually really old?” .

 We entered the waiting room, like we had so many times before. I staggered in and my mom helped me find a close chair. I caught my breath and looked around the room. There was a frail elderly woman with a blank stare sitting across from me. To my left was an elderly male with a leg brace and large deformed knuckles on his hands. I was a little annoyed to see an afghan quilt slung over one of the chairs. “Where was I?”. I felt like I just stepped into an old home. “This couldn’t be the place for me. I think there must have been a mistake.”

Moments later a middle aged woman with purple scrubs came around the corner and firmly called my name. I did my best to heave myself up and follow her down the hall. I couldn’t keep up with her pace. I was annoyed that she would walk so fast. It was all I could do to hobble. “Couldn’t she see that I was in pain?". Frustrated, I decided I wasn’t going to make her job easy.

I entered the exam room and immediately noticed another afghan quilt slung over the chair. “This place was weird.” As I sat down on the exam table a blood pressure cuff was placed around my frail arm and the woman in scrubs began asking me questions. “Doesn’t she know she is hurting me?”.  I answered the first few questions but then resigned myself to stop talking altogether. I was overcome with frustration and pain. I blankly stared at her, hoping she would get that I had nothing else to give. “You’re in a lot of pain, huh?” she posed. I just looked at her feebly and watched her exit the room.

A few silent moments later a woman with short white hair and a stethoscope around her neck entered the room. She had no white coat, but I knew she was a doctor. She greeted us and introduced herself as “Dr. Arnold”. She asked a few questions and looked at me with concern. At that moment I knew she understood. I could see it in her eyes. She gently pressed her stethoscope against my chest and back and asked me to “take some deep breaths”. I did and was dizzy afterward.

We watched as she sat on her stool, glancing down at her stack of papers. I knew those papers were about me. I knew the lab values and numbers on those pages told my story. She glanced up for a moment, gave me a calm smile and began to tell us she feels I may have something called “Stills disease”.

“What was that?”.  We had never even heard of it.

She didn’t say much about it. She recommended we do some reading online. She recommended we get some additional labs done to “check for a few other things”. She recommended we come back in one week.

That night my less than technology savvy mom began to teach herself how to surf the internet. Desperate to help her girl, she took her pointer finger and determinedly began to type, one letter at a time. The pauses were long as she typed each letter, trying to familiarize herself with the keyboard. That didn’t stop her. She was determined to learn anything and everything about this “Still’s disease”.

I, on the other hand, was less than enthusiastic to learn. My pain and weakness haunted me. I wasn’t getting excited about any fancy titles for my pain.

There was still no relief.